Alberta Health Data Asset Directory - Updated July 2018

 
Alberta Health Data Asset Directory - Updated July 2018
Alberta
Health Data
Asset Directory
Updated July 2018
Alberta Health Data Asset Directory - Updated July 2018
Copyright © 2018 by the Alberta Real World Evidence (RWE)
Consortium

Users are permitted to make copies of this work for non-
commercial purposes only, provided it is not modified
when reproduced and appropriate credit is given to the
Alberta Real World Evidence (RWE) Consortium.

Published July 2018 Edmonton, Alberta, Canada
Alberta Health Data Asset Directory - Updated July 2018
Message from the Co-Chairs
                                   Real World Evidence (RWE) studies investigate the impact of an
                                   intervention or technology on health outcomes and resource utilization
                                   in clinical conditions outside of the controlled clinical trial setting. The
                                   evidence is generated from routinely collected health data to evaluate
                                   the safety, effectiveness, and value of newly introduced or existing
                                   health technologies and/or other interventions.

                                   RWE is playing a growing role in technology adoption, as well as health
                                   policy and clinical practice decision-making, recognizing some of the
                                   limitations of traditional controlled clinical trials. Governments and
                                   health service providers are using RWE to improve health outcomes in
                                   priority areas, and to monitor the post-market safety and effectiveness
                                   of new or existing health technologies and innovations. This information
                                   is also being used to support coverage and procurement decisions, as
                                   well as to assess return-on-investment of public dollars. Additionally,
Christopher McCabe                 clinicians are increasingly using this information in the development of
Executive Director and CEO,        clinical guidelines and decision-support tools, and, with quality RWE,
Institute of Health Economics
(Secretariat)                      technology developers may improve market access over time.

                                   Alberta is a leader in health innovation, and has distinct advantages that
                                   make the province attractive to health and life sciences-related activity,
                                   including:

                                    • a single health authority and the largest fully integrated health
                                      system in Canada;
                                    • Strategic Clinical Networks to drive innovation and its
                                      implementation across the health system;
                                    • advanced and comprehensive health information systems and
Scott Klarenbach
                                      database assets; and
Assist. Dean, Health Outcomes       • world leading clinical, methodological, and analytic expertise in
Faculty of Medicine & Dentistry,
University of Alberta
                                      universities and research centres.

                                   Given Alberta’s significant potential to contribute RWE to support
                                   decision-making, the Universities of Alberta and Calgary, and the
                                   Institute of Health Economics, have led the formation of the Alberta
                                   RWE Consortium. We are excited that with the formation of this new
                                   Consortium we are now poised to build upon our Alberta advantages,
                                   and take a greater leadership role in RWE research, nationally and
                                   internationally. The Alberta RWE Consortium will help foster cutting-
                                   edge health research with industry and other health sector partners
                                   interested in real world data applications in Alberta, utilizing the
Fiona Clement                      data assets outlined in this directory. The Consortium will also be
Associate Professor                instrumental in supporting and fostering the availability and accessibility
Cumming School of Medicine,
University of Calgary              of additional data assets going forward.

                                                                                                                  i
Alberta Health Data Asset Directory - Updated July 2018
About the RWE Consortium

Alberta has one of the largest, most mature, detailed and comprehensive
health system data depositories in Canada. As such, Alberta is poised to
become a global leader in RWE generation. To realize this potential, the
Universities of Alberta and Calgary, and the Institute of Health Economics,
have led the formation of the Alberta RWE Consortium. The Consortium
leads RWE studies, supported by industry or other health system
partners, and has a mandate to support the development of quality RWE
generation and utilization.

Key functions of the Consortium include:

     • Optimization of Alberta’s RWE studies
     • Strengthening the Alberta RWE ecosystem
     • Providing world class project support services, including study design,
       execution, and knowledge sharing
     • Identifying and supporting projects that align with provincial health
       and policy priorities, ensuring relevance to decision-makers
     • Convening the best pan-provincial teams for commissioned, large-
       scale projects that may also have implementation components

Consortium membership includes key Alberta health system stakeholders
such as Alberta Innovates, Alberta Health, Alberta Economic Development
and Trade, and Alberta Health Services. The Institute of Health Economics
serves as the Secretariat for the Consortium, and is the first point of
contact for organizations interested in exploring an RWE study in Alberta.

       FOR MORE INFORMATION, CONTACT US AT:

       1200—10405 Jasper Avenue
       Edmonton, AB
       Canada T5J 3N4

       Email:		       innovation@ihe.ca
       Website:       www.AlbertaRWE.ca/

ii
Alberta Health Data Asset Directory - Updated July 2018
About the Directory

This Directory has been prepared by the Alberta RWE Consortium to
provide interested organizations with an overview of the major data
assets within the province. The identified assets are organized into three
(3) different categories.

1. Clinical (e.g. laboratory investigations, dispensed pharmaceuticals,
   immunizations)
2. Populations & Health Resource Utilization (e.g. provincial client
   registry, hospital admissions, physician visits)
3. Oncology (i.e., administrative and clinical data specific to oncology)

This Directory will be updated regularly as new assets become available
or accessible. Some of the assets in this Directory have more limited
access and documentation than others. For all potential RWE projects,
research teams working under the leadership of the Consortium
will conduct a feasibility assessment to confirm data availability and
accessibility for specific requirements.

Below is a high-level overview of some of the data assets in Alberta's
health care system.

                                                                            iii
Alberta Health Data Asset Directory - Updated July 2018
Alberta has one of the largest, most
mature, detailed and comprehensive
health system data depositories in
Canada. As such, Alberta is poised
to become a global leader in real
world evidence generation.
Alberta Health Data Asset Directory - Updated July 2018
Clinical Data Assets
These assets are drawn from clinical information systems (CISs), as well as other databases that include
laboratory tests, imaging, pharmaceutical, and vaccination databases.

CLINICAL INFORMATION SYSTEM (CIS)

Canadian Primary Care Sentinel Surveillance Network - Alberta (CPCSSN AB)                                 1

Community-Based CISs (Electronic Medical Records) (EMR)                                                   1

Connect Care & Other Hospital CISs                                                                        2

DIAGNOSTIC IMAGING

Diagnostic Imaging (DI)                                                                                   2

IMMUNIZATION

Immunization and Adverse Reactions to Immunizations (Imm/ARI)                                             3

LABORATORY

Consolidated Laboratory Data Repository (CLDR)                                                            3

Medical Laboratory (General)                                                                              4

PHARMACEUTICAL

Alberta Blue Cross Claims (ABC)                                                                           4

Pharmaceutical Information Network (PIN)                                                                  5

OTHER CLINICAL DATABASES

Alberta Perinatal Health Program (APHP)                                                                   6

Alberta Real Time Syndromic Surveillance Network (ARTSSN)                                                 6

Communicable Disease Reporting System (CDRS)                                                              7

Perinatal7

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Alberta Health Data Asset Directory - Updated July 2018
Populations & Health Resource
Utilization Data Assets
These assets contain data on populations (providers/patient demographics and population health) and
encounter/procedure data.

ENCOUNTERS/PROCEDURES

Admission, Discharge, Transfer (ADT)                                                                 8

Alberta Continuing Care Information System (ACCIS)                                                   8

Alberta Waitlist Registry                                                                            9

Alberta Wait Times Reporting (AWTR)                                                                  9

Inpatient - Discharge Abstract Database (DAD)                                                        10

National Ambulatory Care Reporting System (NACRS)                                                    10

Practitioner Claims (Fee-For-Service Claims, Supplemental Enhanced Service Event) (SESE)             11

PATIENT/PROVIDER DEMOGRAPHICS

Population Health                                                                                    11

Population Registry                                                                                  12

Provincial Client Registry (PCR)                                                                     12

Provincial Provider Registry (PPR)                                                                   13

Provincial Registry                                                                                  13

Vital Statistics                                                                                     14

Vital Statistics – Births                                                                            14

Vital Statistics – Deaths                                                                            15

POPULATION HEALTH

Canadian Community Health Survey (CCHS)                                                              15

Canadian Tobacco, Alcohol, and Drugs Survey (CTADS)                                                  16

National Health Population Survey                                                                    16

vi
Oncology Data Assets
These assets are uniquely specific to oncology, and contain both clinical and health resource utilization data.

CLINICAL INFORMATION SYSTEM (CIS)

ARIA (Oncology-Specific CIS)                                                                                     17

REGISTRY

Alberta Cancer Registry (ACR)                                                                                    17

RESEARCH

Alberta Cancer Research BioBank (ACRB)                                                                           18

                                                                                                                  vii
Data Assets by Name
Admission, Discharge, Transfer (ADT)                                                       8

Alberta Blue Cross Claims (ABC)                                                            4

Alberta Cancer Registry (ACR)                                                              17

Alberta Cancer Research BioBank (ACRB)                                                     18

Alberta Continuing Care Information System (ACCIS)                                         8

Alberta Perinatal Health Program (APHP)                                                    6

Alberta Real Time Syndromic Surveillance Network (ARTSSN)                                  6

Alberta Waitlist Registry                                                                  9

Alberta Wait Times Reporting (AWTR)                                                        9

ARIA (Oncology-Specific CIS)                                                               17

Canadian Community Health Survey (CCHS)                                                    15

Canadian Primary Care Sentinel Surveillance Network - Alberta (CPCSSN AB)                  1

Canadian Tobacco, Alcohol, and Drugs Survey (CTADS)                                        16

Communicable Disease Reporting System (CDRS)                                               7

Community-Based CISs (Electronic Medical Records) (EMR)                                    1

Connect Care & Other Hospital CISs                                                         2

Consolidated Laboratory Data Repository (CLDR)                                             3

Diagnostic Imaging (DI)                                                                    2

Immunization and Adverse Reactions to Immunizations (Imm/ARI)                              3

Inpatient - Discharge Abstract Database (DAD)                                              10

Medical Laboratory (General)                                                               4

National Ambulatory Care Reporting System (NACRS)                                          10

National Health Population Survey                                                          16

Perinatal7

Pharmaceutical Information Network (PIN)                                                   5

Population Health                                                                          11

Population Registry                                                                        12

Practitioner Claims (Fee-For-Service Claims, Supplemental Enhanced Service Event) (SESE)   11

Provincial Client Registry (PCR)                                                           12

Provincial Provider Registry (PPR)                                                         13

viii
Provincial Registry         13

Vital Statistics            14

Vital Statistics – Births   14

Vital Statistics – Deaths   15

                             ix
Canadian Primary Care Sentinel Surveillance Network - Alberta
(CPCSSN AB)
Category:          Clinical                             Focus Area:        Clinical Information System (CIS)

Start Date:        2008                                 End Date:          Present

Refreshes:         Bi-Annually (Jun 30/Dec 31)          Custodian:         University of Alberta

Description:
CPCSSN is a primary care research initiative—it is the first pan-Canadian multi-disease public and population
health surveillance system. The initiative collects health information from electronic medical records in the
offices of participating primary care providers (e.g. family physicians). The aim is to improve the quality of
care for Canadians suffering from five chronic and mental health conditions (hypertension, osteoarthritis,
diabetes, chronic obstructive pulmonary disease [COPD], and depression) and three neurologic conditions
(Alzheimer’s and related dementias, epilepsy, and Parkinson’s disease).

CPCSSN in Alberta consists of data from two practice-based primary care research networks. These can
readily be merged as required. The current holdings contain de-identified, standardized data from around
300 family physicians for 300,000 patients.

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Community-Based CISs (Electronic Medical Records) (EMR)

Category:          Clinical                             Focus Area:        Clinical Information System (CIS)

Start Date:        Varies                               End Date:          Present

Refreshes:         Daily                                Custodian:         Physicians

Description:
Community-based primary care and specialist physician offices utilize a number of different clinical
information systems, generally referred to as Electronic Medical Records (EMRs). The adoption rate is high,
approximately 80-85%. A majority of offices use information systems from one vendor: TELUS Health
Solutions (there are three different EMRs in the TELUS portfolio).

Other Remarks:
Currently these EMRs do not share data with Alberta Netcare. However, it is anticipated in the future that
elements contained in the records will be systematically uploaded to Netcare and be available for research
purposes.

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Connect Care & Other Hospital CISs

Category:          Clinical                              Focus Area:         Clinical Information System (CIS)

Start Date:        Varies                                End Date:           Present

Refreshes:         Daily                                 Custodian:          Alberta Health Services (AHS)

Description:
Currently there are a number of different clinical information systems in use within AHS facilities. AHS
plans to consolidate these various information systems under a common, unified CIS, called Connect Care.
Connect Care is the bridge between information, healthcare teams, patients, and the future.

Through a common provincial clinical information system, Connect Care will enable consistent practices
across Alberta and will improve the care we provide for patients and their families. The goal is to unify over
1,300 independent information systems across AHS.

Other Remarks:
The implementation of this system is still in progress and being rolled out throughout Alberta. The goal is to
become the central shared CIS within Alberta Health Services once integration is complete.

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Diagnostic Imaging (DI)

Category:          Clinical                              Focus Area:         Diagnostic Imaging

Start Date:        Jan 2011                              End Date:           Present

Refreshes:         Daily (7 days latency)                Custodian:          Alberta Health Services (AHS)

Description:
The DI Shared Data Model contains data elements from three different Radiology Information Systems
(RISs); Calgary (Cerner Millennium), Edmonton (AGFA RIS), and Meditech (Aspen, Chinook, David Thompson,
East Central, Northern Lights, Palliser, and Peace Country) and excludes any non-AHS data. Data is located
in a restricted schema and includes all DI interventions and diagnostic tests as per the CPEL Translation
Table (Reference Table) as well as a collection of identifiable patient data from each RIS’s ADT clinical source
system.

Other Remarks:
Restricted access to AHS, but may be available at a later date.

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2
Immunization and Adverse Reactions to Immunizations (Imm/ARI)

Category:           Clinical                               Focus Area:          Immunization

Start Date:         Varies                                 End Date:            Present

Refreshes:          Weekly                                 Custodian:           Alberta Health/Alberta Health
                                                                                Services (AHS)

Description:
Imm/ARI is the largest collection of province-wide immunization data currently available. It includes
information from:

 • AHS immunizers in all zones (this includes all publicly funded vaccine and some travel)
 • Pharmacist immunizers (this includes influenza vaccine)

Other Remarks:
Immunization data for AHS facilities go back 20-50 years, and select pharmacies go back 6-10 years. The
Edmonton Zone updates monthly instead of weekly.

Use by researchers is currently limited to Alberta Health-initiated projects. However, more open access is
anticipated, and researcher-initiated requests are currently handled on a case-by-case basis.

This dataset is not population-level.

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Consolidated Laboratory Data Repository (CLDR)

Category:           Clinical                               Focus Area:          Laboratory

Start Date:         Apr 2015                               End Date:            Present

Refreshes:          Daily                                  Custodian:           Alberta Health Services (AHS)

Description:
The CLDR has approximately 25 fields that will capture both historical and current data states (e.g. Personal
Health Number, date of birth, test names, test codes, and provider sites). This will allow queries to be run on
the data, as it existed at a certain point in time, not just the most accurate data. This will allow data pulls, for
example, on current or historical data for provider locations patient identifiers, and test name changes.

Other Remarks:
Dataset name currently under review and may change.

Restricted access to third-party (non-AHS) procedures. Restricted access to Lab Provincial Data Team during
Testing & Data Validation.

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                                                                                                                       3
Medical Laboratory (General)

Category:              Clinical                             Focus Area:     Laboratory

Start Date:            Varies                               End Date:       Varies

Refreshes:             Daily (8 days latency)               Custodian:      Alberta Health Services (AHS)

Description:
The Laboratory Project Release 1 is all AHS general lab tests and includes clinical chemistry, toxicology,
hematology, serology, urinalysis, and immunology. Sites to include Meditech, Millennium, Sunquest, and
Optimum Lab (previously LabFusion).

Other Remarks:
Available from:

    •   LabFusion: Jan 1, 2009 to Jan 31, 2017 (*Contract Ended)
    •   Meditech: Jan 1, 2009 to current
    •   Millennium: Apr 1, 2012 to current
    •   Sunquest: Apr 1, 2012 to current

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Alberta Blue Cross Claims (ABC)

Category:              Clinical                             Focus Area:     Pharmaceutical

Start Date:            Apr 1994                             End Date:       Present

Refreshes:             Monthly and Annually                 Custodian:      Alberta Health

Description:
ABC provides information on the following types of claims records covered under supplementary health
benefit plans and paid by Alberta Blue Cross on behalf of Alberta Health:

    • Prescription drug dispensing under supplementary health benefit plans (97% of ABC records)
    • Private or semi-private hospital accommodation
    • Claims for extended health services, group and non-group benefits, palliative coverage, coverage for
      seniors, and low-income benefits

Other Remarks:
This dataset covers only seniors, their dependents, and persons on assistance.

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4
Pharmaceutical Information Network (PIN)

Category:          Clinical                             Focus Area:         Pharmaceutical

Start Date:        Apr 2008                             End Date:           Present

Refreshes:         Weekly                               Custodian:          Alberta Health/Alberta Health
                                                                            Services (AHS)

Description:
The PIN is the central repository of prescription drugs dispensed from community pharmacies. The data is
patient identifiable and includes—but is not limited to—data elements such as patient identification data
(Unique Lifetime Identifier, date of birth), drug name, drug identification number (DIN), drug dose, quantity
dispensed, and number of days supplied. This is a primary dataset for community drug utilization reviews
(DUR) for quality improvement, research, and evaluation in AHS.

PIN includes historical data from 2002 to current and is updated on a weekly update schedule. All available
reference tables from Alberta Health and the Health Canada Drug Product Database (HCDPD) are also
loaded and updated on a regular schedule.

Other Remarks:
Cost and benefit payment information is not available, and the reason for the prescription is not captured.
Information is on dispensed drugs (i.e. not prescriptions), and in-hospital dispenses are not included.
Accuracy and completeness of data improves over time (currently, about 95% of all pharmacists submit
records). Although PIN has been in place since 2002, the regulations that mandated data provision were not
enacted until 2007. The data are generally seen as being complete enough for research from 2010 forward.

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Alberta Perinatal Health Program (APHP)

Category:             Clinical                              Focus Area:      Other Clinical Databases

Start Date:           1998                                  End Date:        Present

Custodian:            Alberta Health Services (AHS)

Description:
The APHP collects perinatal data for all hospital births and from the Registered Midwives who attend out of
hospital births. Data are supplied to the APHP by one of three methods:

    1) directly from paper records,
    2) by secure electronic transfer, or
    3) through direct data entry at the facility where the birth occurred.

Provincial data are collated in PeriLinkAB , a comprehensive perinatal repository that supports the Alberta
Perinatal Health Program objectives. Analysis and interpretation of the data supports the Alberta Perinatal
Health Program, Alberta Health Services, the Health Zones, and other stakeholders in achieving optimal
health for expectant mothers and the infants that are born each year in Alberta

Other Remarks:
Reports are produced in response to specific requests for data/information. A Data Request Form must be
completed to access such data.

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Alberta Real Time Syndromic Surveillance Network (ARTSSN)

Category:             Clinical                              Focus Area:      Other Clinical Databases

Custodian:            Alberta Health Services (AHS)

Description:
ARTSSN is an automated real-time surveillance data repository able to rapidly refresh data that include
school absenteeism information, calls about health concerns from Health Link Alberta (HLA); a provincial
telephone service for health advice and information, and emergency department visits categorized by
standardized chief complaint.

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Communicable Disease Reporting System (CDRS)

Category:          Clinical                             Focus Area:        Other Clinical Databases

Custodian:         Alberta Health

Description:
The CDRS is a collection of functional components used in the tracking of communicable diseases. The CDRS
consists of three applications to record communicable disease information. The Notifiable Disease Report
(NDR) module is populated with notificable disease data received from regional health authorities and labs.

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Perinatal

Category:          Clinical                             Focus Area:        Other Clinical Databases

Start Date:        2004                                 End Date:          2008

Refreshes:         Not Required                         Custodian:         Alberta Health Services (AHS)

Description:
The Alberta Perinatal data set contains data from all hospital facilities where women gave birth and from
Registered Midwives attending out of hospital births in Alberta. It includes information on pregnancy,
birth, and mortality. The perinatal project has been prioritized and is slated to be updated in the AHS Data
Repository for Reporting (AHSDRR) with data for 2009, 2010 and 2011 in the upcoming months.

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Admission, Discharge, Transfer (ADT)

Category:          Populations/Health Resource         Focus Area:        Encounters/Procedures
                   Utilization

Start Date:        Apr 2007                            End Date:          Present

Refreshes:         Daily                               Custodian:         Alberta Health Services (AHS)

Description:
Contains admission, discharge, and transfer for services (inpatient, ambulatory, and seniors) attached to an
acute facility. ADT sources systems of Meditech for the following sites: Aspen Regional Health (ARH), Chinook
Health Region (CHR), David Thompson Health (DTH), East Central Health (ECH), Peace Country Health (PCH),
Palliser Health Region (PHR), and Northern Lights Health (NLH).

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Alberta Continuing Care Information System (ACCIS)

Category:          Populations/Health Resource         Focus Area:        Encounters/Procedures
                   Utilization

Start Date:        Jan 2007                            End Date:          Present

Custodian:         Alberta Health/Alberta Health
                   Services (AHS)

Description:
The ACCIS provides a mechanism for regional reporting of continuing care information to a centralized
repository within Alberta Health, and also allows for reporting of continuing care data to two Canadian
Institute for Health Information (CIHI) national databases.

Elements include demographics, admission, and discharge information, as well as outcome scales, quality
indicators, and resource utilization groupers as outputs from the interRAI assessment instruments.

Other Remarks:
Includes Long-Term Care & Community Care (from Apr 1, 2011). The Community Care dataset is currently
considered incomplete, with significant volumes of historical data yet to be submitted

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8
Alberta Waitlist Registry

Category:          Populations/Health Resource          Focus Area:         Encounters/Procedures
                   Utilization

Start Date:        Oct 2003                             Custodian:          Alberta Health

Description:
The Alberta Waitlist Registry was publicly launched in October 2003 in response to the Premier’s Advisory
Council on Health report “A Framework for Reform”, published in January 2002.

The general public, healthcare practitioners, and the media use the Waitlist Registry. It provides information
for healthcare decision-making as well as fact-based answers to public concerns over waitlists. The key
business process that the Registry involves is the collection and analysis of waitlist records and related
information that Alberta facilities submit to Alberta Health.

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Alberta Wait Times Reporting (AWTR)

Category:          Populations/Health Resource          Focus Area:         Encounters/Procedures
                   Utilization

Start Date:        Jul 2003                             End Date:           Present

Refreshes:         Monthly                              Custodian:          Alberta Health Services (AHS)

Description:
In 2003, Alberta Health & Wellness (AHW) introduced a website which provides information on wait times for
surgical and medical procedures. The AWTR provides accurate and current wait times across the province
for publicly funded surgeries and selected diagnostic services. The registry shows aggregate non-identifiable
data for how many patients are currently waiting for a procedure by hospital and by physician, and the wait
time associated to an elective surgery or diagnostic imaging procedure.

The AWTR is the result of one of the recommendations of the Premier's Advisory Council on Health. The
information on the registry will be used to set realistic access targets and proceed with booking services.

Each month, the Extract/Transform/Load (ETL) runs and calculates new wait time information, based on
existing data and the new data that has been received during the month.

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Inpatient - Discharge Abstract Database (DAD)

Category:          Populations/Health Resource           Focus Area:        Encounters/Procedures
                   Utilization

Start Date:        Apr 2002                              End Date:          Present

Refreshes:         Monthly                               Custodian:         Alberta Health/Alberta Health
                                                                            Services (AHS)

Description:
The DAD is a database for information on all AHS separations for acute care institutions, including
discharges, deaths, sign-outs, and transfers within a fiscal year (April 1 to March 31). The DAD contains
information on recipients, services, diagnoses, and procedure interventions for those who have been
discharged from a hospital inpatient bed. Over time, the DAD has also been used to capture day surgery
procedures, long-term care, rehabilitation, and other data.

Other Remarks:
Updated monthly. However, all information can be corrected or deleted once submitted; caution is
recommended when using open year data. Once a fiscal year is closed, data can no longer be modified.
Alberta Health typically discloses data from the closed annual files available in the late Fall each year.

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National Ambulatory Care Reporting System (NACRS)

Category:          Populations/Health Resource           Focus Area:        Encounters/Procedures
                   Utilization

Start Date:        Apr 2010                              End Date:          Present

Refreshes:         Monthly                               Custodian:         Alberta Health Services (AHS)

Description:
The NACRS is a facility-based ambulatory care information (same-day surgery, day procedures, emergency
room visits, and community rehabilitation program services occurring in publicly-funded facilities). This
dataset contains recipient, service, diagnosis, and procedure interventions. Also includes information about
providers and derived elements (e.g., groupers).

This system was formerly known as the Alberta Ambulatory Care Reporting System (AACRS).

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Practitioner Claims (Fee-For-Service Claims, Supplemental Enhanced
Service Event) (SESE)
Category:           Populations/Health Resource          Focus Area:        Encounters/Procedures
                    Utilization

Start Date:         Apr 1994                             End Date:          Present

Refreshes:          Weekly                               Custodian:         Alberta Health

Description:
This dataset consists of processed claims for eligible Albertans and medical reciprocal patients to pay
medical doctors and other allied practitioners (optometrists, podiatrists, podiatric surgeons, and dentists)
and to track shadow-billed claims. “Eligible Albertans” have lived in Alberta for more than three months and
are registered with Alberta Health to receive Alberta Health Care Insurance Plan (AHCIP) benefits.

Elements include:

• Patient information: identifier, demographic information, location
• Provider information: identifier, specialty, role, location, referring provider identifier, discipline
• Service information: health service code, date of service, amount paid (role, trays, time surcharges, total),
  service units paid and calls claimed, facility, up to three diagnostic codes, shadow billed claims

Other Remarks:
Privacy of providers is highly protected and must be absolutely de-identified prior to disclosure. Data is
updated weekly, but accuracy and completeness of claims data improves as time from date of service
increases. A six-month payment lag is typically used.

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Population Health

Category:           Populations/Health Resource          Focus Area:        Patient/Provider Demographics
                    Utilization

Start Date:         1994                                 End Date:          Present

Refreshes:          As Needed                            Custodian:         Alberta Health Services (AHS)

Description:
This table contains six data elements of the Patient/Care-Based Funding Population database. These
elements contain information about specific populations from 1994 onward. The elements can be linked
via postal code to other data sets for further information about that population. Data is derived from the
Provincial Registry data using the Alberta Health Population Projections which are updated approximately
every three years. The Alberta Health Population Projections were last updated July 2015.

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Population Registry

Category:              Populations/Health Resource         Focus Area:        Patient/Provider Demographics
                       Utilization

Start Date:            Apr 1993                            End Date:          Present

Custodian:             Alberta Health

Description:
The Registry contains demographic information for all Albertans with Alberta Health Care Insurance Plan
(AHCIP) coverage. It is used as a base for Alberta population counts. Elements include:

     • Personal Health Number, date of birth, sex, postal code
     • Active coverage, birth, and death indicators as of March 31
     • Migration indicators - whether the person has migrated into Alberta or out of Alberta during the fiscal
       year (no information on where the person came from or went to)
     • Indicator for invalid recipient address (e.g. mail returned to Alberta Health)
     • Date and reason coverage was cancelled

Other Remarks:
If registrants do not report address changes, etc., the information on file will not be current. Alberta Health
uses other data sources to update registration data when a move to another province or death has occurred,
even if the person or family does not report the changes.

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Provincial Client Registry (PCR)

Category:              Populations/Health Resource         Focus Area:        Patient/Provider Demographics
                       Utilization

Custodian:             Alberta Health

Description:
The PCR is a patient identification system that links diverse sources of demographic person data information
within and across health organizations and jurisdictions, and will provide the foundation for a province-wide
Electronic Health Record.

The various groups of users include the Health Region and Alberta Cancer Board Registry Integrity Units,
the Provincial Registry Integrity Units (Alberta Health), Stakeholder Registration, and Health Information
Management business units.

Other Remarks:
While the PCR also provides population data, it is advised to use the Provincial Registry files for demographic
information.

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Provincial Provider Registry (PPR)

Category:          Populations/Health Resource          Focus Area:        Patient/Provider Demographics
                   Utilization

Custodian:         Alberta Health

Description:
The PPR is a centralized source of key information about health service providers who are members of
regulated colleges. It compiles information and reconciles multiple records from different data sources and
acts as a source of truth for those that are authorized to access the information.

The regulated colleges supply heath service provider data to the PPR database. The data is managed to
eliminate duplicates, link records between colleges, and assign a unique identifier—the HSPID. The health
service provider data will then be accessible to authorized health service organizations such as Alberta
Health Services, and divisions of Alberta Health, such as the Health Workforce Planning Division.

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Provincial Registry

Category:          Populations/Health Resource          Focus Area:        Patient/Provider Demographics
                   Utilization

Start Date:        Apr 1994                             End Date:          Present

Refreshes:         Annually (3rd Quarter)               Custodian:         Alberta Health Services (AHS)

Description:
The Provincial Registry table is also referred to as Population Demographics, and is made available by
Alberta Health. Data is extracted from the Alberta Health Care Insurance Plan (AHCIP) Registry and provides
basic medical and hospital insurance coverage for most Albertans under the Canada Health Act. The number
of registrants is used as a proxy for populations of the regional health authorities for the Annual Population
Funding Model.

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Vital Statistics

Category:           Populations/Health Resource           Focus Area:         Patient/Provider Demographics
                    Utilization

Start Date:         Varies                                End Date:           Present

Refreshes:          Annually (fiscal year)                Custodian:          Service Alberta/Alberta Health

Description:
Vital Statistics are defined as records dealing with births, stillbirths, and deaths; all events which have to do
with an individual’s entrance or departure from life, together with changes in civil status.

Other Remarks:
 • Birth Registry - Available from: 1983 to Current (December 31, 2015)
 • Death Registry - Available from: 2000 to Current (March 31, 2015)
 • Stillbirth Registry - Available from: 1983 to Current (December 31, 2015)

Data managed by Service Alberta, and provided to Alberta Health for use. Service Alberta must authorize
any disclosure.

Personal Health Numbers are not necessarily available for all years of the data.

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Vital Statistics – Births

Category:           Populations/Health Resource           Focus Area:         Patient/Provider Demographics
                    Utilization

Start Date:         Jan 2005                              End Date:           Present

Refreshes:          Annually (fiscal year)                Custodian:          Service Alberta/Alberta Health

Description:
All live births delivered within Alberta must be registered with Alberta Vital Statistics. Upon birth, the Notice
of a Live Birth or Stillbirth form (PNOB) is completed and forwarded to Alberta Vital Statistics. In addition to
the PNOB, the parents/guardians are required to register the birth with Alberta Vital Statistics completing the
Registration of Birth form within 10 days of the birth event. This information is then entered into the Alberta
Vital Statistics information system and a birth certificate is issued.

Elements include:
 • Date of birth, sex, location of birth, hospital identifier
 • Kind of birth (e.g. twins), birth order, gestation, birth weight
 • Demographic information on the mother

Other Remarks:
Service Alberta is the data custodian and must authorize any disclosure.

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Vital Statistics – Deaths

Category:          Populations/Health Resource           Focus Area:         Patient/Provider Demographics
                   Utilization

Start Date:        Jan 1999                              End Date:           Present

Refreshes:         Annually (fiscal year)                Custodian:          Service Alberta/Alberta Health

Description:
All deaths occurring in Alberta must be registered with Alberta Vital Statistics. Information in the file
is derived from the Death Registration form, medical certificate of death, and the medical examiner’s
certificate of death (where appropriate). Additional derived variables are added to the file to facilitate queries
and analysis of the data.

Elements include:
 • Date of death, place of death, hospital identifier
 • Cause of death, attendant at time of death, autopsy
 • Demographic information including age, sex, residence

Other Remarks:
Service Alberta is the data custodian and must authorize any disclosure.

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Canadian Community Health Survey (CCHS)

Category:          Populations/Health Resource           Focus Area:         Population Health
                   Utilization

Refreshes:         Not Required                          Custodian:          Alberta Health

Description:
The CCHS is a cross-sectional survey that collects information related to health status, health care utilization,
and health determinants for the Canadian population. It surveys a large sample of respondents and is
designed to provide reliable estimates at the health region level.

CCHS is a cross-sectional survey that collects information related to health status, health care utilization, and
health determinants for the Canadian population. CCHS Cycle 2.2 Nutrition is a national health survey that
collects information from Canadians about their eating habits and use of vitamin and mineral supplements,
as well as other health factors.

Other Remarks:
Data is a one-time microdata file. This non-identifiable microdata file contains characteristics pertaining to
survey information. This is a licensed product, subject to the terms of the license agreement.

There are restrictions on the use of CCHS for research purposes, placed on Alberta Health. Contact Alberta
Health to learn more.

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Canadian Tobacco, Alcohol, and Drugs Survey (CTADS)

Category:          Populations/Health Resource           Focus Area:         Population Health
                   Utilization

Refreshes:         Not Required                          Custodian:          Alberta Health Services (AHS)

Description:
The CTADS is a biennial general population survey of tobacco, alcohol and illicit drug use among Canadians
aged 15 years and older. It replaces the Canadian Tobacco Use Monitoring Survey (CTUMS), which was
conducted from 1999-2012 and the Canadian Alcohol and Drug Use Monitoring Survey (CADUMS), which was
conducted from 2008-2012. The CTADS merged the core tobacco content from CTUMS and the core drug and
alcohol content from CADUMS resulting in more efficient data collection and providing a tool to monitor and
compare the use of multiple products and substances with addictive properties. The CTADS is conducted by
Statistics Canada on behalf of Health Canada.

Other Remarks:
Data is a one-time microdata file. This non-identifiable microdata file contains characteristics pertaining to
survey information. This is a licensed product, subject to the terms of the license agreement.

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National Health Population Survey

Category:          Populations/Health Resource           Focus Area:         Population Health
                   Utilization

Refreshes:         Not Required                          Custodian:          Alberta Health

Description:
The Household component is a longitudinal (collecting health information from the same individuals
each cycle) survey containing information on the health of the Canadian population and related socio-
demographic information.

Other Remarks:
Data is a one-time microdata file. This non-identifiable microdata file contains characteristics pertaining to
survey information. This is a licensed product, subject to the terms of the license agreement.

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ARIA (Oncology-Specific CIS)

Category:          Oncology                            Focus Area:        Clinical Information System (CIS)

Start Date:        2008                                End Date:          Present

Refreshes:         Daily                               Custodian:         Alberta Health Services (AHS)

Description:
ARIA is the electronic medical record system for cancer patients in Alberta, managed by Cancer Control
Alberta. The system houses chemotherapy, progress notes, referral, and demographic information, as well
as pathology data and some diagnostic imaging data.

Other Remarks:
Some pharmacy information is available, but is not complete. Most pharmacy data is available in the
Pharmaceutical Information Network (PIN).

Data is planned to be incorporated into Connect Care in the next 5-7 years.

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Alberta Cancer Registry (ACR)

Category:          Oncology                            Focus Area:        Registry

Start Date:        1982                                End Date:          Present

Refreshes:         Annually (Spring)                   Custodian:         Alberta Health Services (AHS)

Description:
The ACR contains information on patients diagnosed or treated in Alberta. Data collected includes:
demographic, initial treatment, mortality, and tumour information. The information based on initial
diagnosis and treatment within one year after diagnosis. Treatment data focuses on the occurrence of
surgery, chemotherapy, or radiotherapy. Data is completed approximately 1.5 to 2 years after diagnosis and
contains no details on recurrence. AHS CancerControl also maintains an internal oncology electronic medical
record for this patient level treatment data.

Other Remarks:
Data is available from 1945, but due to changes in coding, data is more consistent from 1982 onward. Access
must be granted through a request process, managed internally. These require appropriate ethics and
supporting documentation to meet legislative requirements and AHS policy/best practice compliance.

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Alberta Cancer Research BioBank (ACRB)

Category:          Oncology                              Focus Area:         Research

Custodian:         Alberta Health Services (AHS)

Description:
The ACRB collects biological materials from participants as well as cancer-related clinical data. This data is
stored within an AHS-owned and Privacy Impact Assessment (PIA)-approved database. There are data on
approximately 26,000 patients, although not all complete.

All samples are annotated with minimal data (name, date of birth, Personal Health Number, diagnosis, cancer
type). A subset of cancer types have enhanced annotation, including breast, ovarian, prostate, colorectal,
and lung cancer. Enhanced annotation includes demographics, diagnosis, surgical/pathological tumour
parameters (e.g. grade, stage, size, hormone receptor status, genetic information, lymph node involvement),
treatment, life status.

Other Remarks:
Access must be approved by the AHS Provincial Research Administration Office, by way of a Material Transfer
Agreement (MTA). The data comes in part from electronic data releases from Surveillance and Reporting and
in part from manual annotation. It is meant for research alone, and while AHS strives for accuracy, it cannot
be guaranteed.

The breast cancer data set is the most complete. In many breast cancer cases, recurrence has been
determined, but this is an interpretation of the clinical data and is not verified.

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